Education: Essay

Reassigning Meaning

The present examination of disability has no need for the medical language of symptoms and diagnostic categories. Disability studies looks to different kinds of signifiers and the identification of different kinds of syndromes for its material. The elements of interest here are the linguistic conventions that structure the meanings assigned to disability and the patterns of response to disability that emanate from, or are attendant upon, those meanings.

The medical meaning-making was negotiated among interested parties who packaged their version of disability in ways that increased the ideas' potency and marketability. The disability community has attempted to wrest control of the language from the previous owners, and reassign meaning to the terminology used to describe disability and disabled people. This new language conveys different meanings, and, significantly, the shifts serve as metacommunications about the social, political, intellectual, and ideological transformations that have taken place over the past two decades.

NAMING OPPRESSION

It has been particularly important to bring to light language that reinforces the dominant culture's views of disability. A useful step in that process has been the construction of the terms ableist and ableism, which can be used to organize ideas about the centering and domination of the nondisabled experience and point of view. Ableism has recently landed in the Readers Digest Oxford Wordfinder (Tulloch 1993), where it is defined as "discrimination in favor of the able-bodied." I would add, extrapolating from the definitions of racism and sexism, that ableism also includes the idea that a person's abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to nondisabled people. Although there is probably greater consensus among the general public on what could be labeled racist or sexist language than there is on what might be considered ableist, that may be because the nature of the oppression of disabled people is not yet as widely understood.

NAMING THE GROUP

Across the world and throughout history various terminologies and meanings are ascribed to the types of human variations known in contemporary Westernized countries as disabilities. Over the past century the term disabled and others, such as handicapped and the less inclusive term crippled, have emerged as collective nouns that convey the idea that there is something that links this disparate group of people. The terms have been used to arrange people in ways that are socially and economically convenient to the society.

There are various consequences of the chosen terminology and variation in the degree of control that the named group has over the labeling process. The terms disability and disabled people are the most commonly used by disability rights activists, and recently policy makers and health care professionals have begun to use these terms more consistently. Although there is some agreement on terminology, there are disagreements about what it is that unites disabled people and whether disabled people should have control over the naming of their experience.

The term disability, as it has been used in general parlance, appears to signify something material and concrete, a physical or psychological condition considered to have predominantly medical significance. Yet it is an arbitrary designation, used erratically both by professionals who lay claim to naming such phenomena and by confused citizens. A project of disability studies scholars and the disability rights movement has been to bring into sharp relief the processes by which disability has been imbued with the meaning(s) it has and to reassign a meaning that is consistent with a sociopolitical analysis of disability. Divesting it of its current meaning is no small feat. As typically used, the term disability is a linchpin in a complex web of social ideals, institutional structures, and government policies. As a result, many people have a vested interest in keeping a tenacious hold on the current meaning because it is consistent with the practices and policies that are central to their livelihood or their ideologies. People may not be driven as much by economic imperatives as by a personal investment in their own beliefs and practices, in metaphors they hold dear, or in their own professional roles. Further, underlying this tangled web of needs and beliefs, and central to the arguments presented in this book is an epistemological structure that both generates and reflects current interpretations.[1]

A glance through a few dictionaries will reveal definitions of disability that include incapacity, a disadvantage, deficiency, especially a physical or mental impairment that restricts normal achievement; something that hinders or incapacitates, something that incapacitates or disqualifies. Legal definitions include legal incapacity or disqualification. Stedman's Medical Dictionary (1976) identifies disability as a "medicolegal term signifying loss of function and earning power," whereas disablement is a "medicolegal term signifying loss of function without loss of earning power" (400). These definitions are understood by the general public and by many in the academic community to be useful ones. Disability so defined is a medically derived term that assigns predominantly medical significance and meaning to certain types of human variation.

The decision to assign medical meanings to disability has had many and varied consequences for disabled people. One clear benefit has been the medical treatments that have increased the well-being and vitality of many disabled people, indeed have saved people's lives. Ongoing attention by the medical profession to the health and well-being of people with disabilities and to prevention of disease and impairments is critical. Yet, along with these benefits, there are enormous negative consequences that will take a large part of this book to list and explain. Briefly, the medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy. Society, in agreeing to assign medical meaning to disability, colludes to keep the issue within the purview of the medical establishment, to keep it a personal matter and "treat" the condition and the person with the condition rather than "treating" the social processes and policies that constrict disabled people's lives. The disability studies' and disability rights movement's position is critical of the domination of the medical definition and views it as a major stumbling block to the reinterpretation of disability as a political category and to the social changes that could follow such a shift.

While retaining the term disability, despite its medical origins, a premise of most of the literature in disability studies is that disability is best understood as a marker of identity. As such, it has been used to build a coalition of people with significant impairments, people with behavioral or anatomical characteristics marked as deviant, and people who have or are suspected of having conditions, such as AIDS or emotional illness, that make them targets of discrimination.[2] As rendered in disability studies scholarship, disability has become a more capacious category, incorporating people with a range of physical, emotional, sensory, and cognitive conditions. Although the category is broad, the term is used to designate a specific minority group. When medical definitions of disability are dominant, it is logical to separate people according to biomedical condition through the use of diagnostic categories and to forefront medical perspectives on human variation. When disability is redefined as a social/political category, people with a variety of conditions are identified as people with disabilities or disabled people, a group bound by common social and political experience. These designations, as reclaimed by the community, are used to identify us as a constituency, to serve our needs for unity and identity, and to function as a basis for political activism.

The question of who "qualifies" as disabled is as answerable or as confounding as questions about any identity status. One simple response might be that you are disabled if you say you are. Although that declaration won't satisfy a worker's compensation board, it has a certain credibility with the disabled community. The degree and significance of an individual's impairment is often less of an issue than the degree to which someone identifies as disabled. Another way to answer the question is to say that disability "is mostly a social distinction. . .a marginalized status" and the status is assigned by "the majority culture tribunal" (Gill 1994, 44). But the problem gets stickier when the distinction between disabled and nondisabled is challenged by people who say, "Actually, we're all disabled in some way, aren't we?" (46). Gill says the answer is no to those whose difference "does not significantly affect daily life and the person does not [with some consistency] present himself/herself to the world at large as a disabled person" (46). I concur with Gill; I am not willing or interested in erasing the line between disabled and nondisabled people, as long as disabled people are devalued and discriminated against, and as long as naming the category serves to call attention to that treatment.

Over the past twenty years, disabled people have gained greater control over these definitional issues. The disabled or the handicapped was replaced in the mid-70s by people with disabilities to maintain disability as a characteristic of the individual, as opposed to the defining variable. At the time, some people would purposefully say women and men with disabilities to provide an extra dimension to the people being described and to deneuter the way the disabled were traditionally described. Beginning in the early 90s disabled people has been increasingly used in disability studies and disability rights circles when referring to the constituency group. Rather than maintaining disability as a secondary characteristic, disabled has become a marker of the identity that the individual and group wish to highlight and call attention to. In this book, the terms disabled and nondisabled are used frequently to designate membership within or outside the community. Disabled is centered, and nondisabled is placed in the peripheral position in order to look at the world from the inside out, to expose the perspective and expertise that is silenced. Occasionally, people with disabilities is used as a variant of disabled people. The use of nondisabled is strategic: to center disability. Its inclusion in this chapter is also to set the stage for postulating about the nondisabled position in society and in scholarship in later chapters. This action is similar to the strategy of marking and articulating "whiteness." The assumed position in scholarship has always been the male, white, nondisabled scholar; it is the default category. As recent scholarship has shown, these positions are not only presumptively hegemonic because they are the assumed universal stance, as well as the presumed neutral or objective stance, but also undertheorized. The nondisabled stance, like the white stance, is veiled. "White cannot be said quite out loud, or it loses its crucial position as a precondition of vision and becomes the object of scrutiny" (Haraway 1989, 152). Therefore, centering the disabled position and labeling its opposite nondisabled focuses attention on both the structure of knowledge and the structure of society.

NICE WORDS

Terms such as physically challenged, the able disabled, handicapable, and special people/children surface at different times and places. They are rarely used by disabled activists and scholars (except with palpable irony). Although they may be considered well-meaning attempts to inflate the value of people with disabilities, they convey the boosterism and do-gooder mentality endemic to the paternalistic agencies that control many disabled people's lives.

Physically challenged is the only term that seems to have caught on. Nondisabled people use it in conversation around disabled people with no hint of anxiety, suggesting that they believe it is a positive term. This phrase does not make much sense to me. To say that I am physically challenged is to state that the obstacles to my participation are physical, not social, and that the barrier is my own disability. Further, it separates those of us with mobility impairments from other disabled people, not a valid or useful partition for those interested in coalition building and social change. Various derivatives of the term challenged have been adopted as a description used in jokes. For instance, "vertically challenged" is considered a humorous way to say short, and "calorically challenged" to say fat. A review of the Broadway musical Big in the New Yorker said that the score is "melodically challenged."

I observed a unique use of challenged in the local Barnes and Nobles superstore. The children's department has a section for books on "Children with Special Needs." There are shelves labeled "Epilepsy" and "Down Syndrome." A separate shelf at the bottom is labeled "Misc. Challenges," indicating that it is now used as an organizing category.

The term able disabled and handicapable have had a fairly short shelf life. They are used, it seems, to refute common stereotypes of incompetence. They are, though, defensive and reactive terms rather than terms that advance a new agenda.

An entire profession, in fact a number of professions, are built around the word special. A huge infrastructure rests on the idea that special children and special education are valid and useful structuring ideas. Although dictionaries insist that special be reserved for things that surpass what is common, are distinct among others of their kind, are peculiar to a specific person, have a limited or specific function, are arranged for a particular purpose, or are arranged for a particular occasion, experience teaches us that special when applied to education or to children means something different.

The naming of disabled children and the education that "is designed for students whose learning needs cannot be met by a standard school curriculum" (American Heritage Dictionary 1992) as special can be understood only as a euphemistic formulation, obscuring the reality that neither the children nor the education are considered desirable and that they are not thought to "surpass what is common."

Labeling the education and its recipients special may have been a deliberate attempt to confer legitimacy on the educational practice and to prop up a discarded group. It is also important to consider the unconscious feelings such a strategy may mask. It is my feeling that the nation in general responds to disabled people with great ambivalence. Whatever antipathy and disdain is felt is in competition with feelings of empathy, guilt, and identification. The term special may be evidence not of a deliberate maneuver but of a collective "reaction formation," Freud's term for the unconscious defense mechanism in which an individual adopts attitudes and behaviors that are opposite to his or her own true feelings, in order to protect the ego from the anxiety felt from experiencing the real feelings.

The ironic character of the word special has been captured in the routine on Saturday Night Live, where the character called the "Church Lady" declares when she encounters something distasteful or morally repugnant, "Isn't that special!"

NASTY WORDS

Some of the less subtle or more idiomatic terms for disabled people such as: cripple, vegetable, dumb, deformed, retard, and gimp have generally been expunged from public conversation but emerge in various types of discourse. Although they are understood to be offensive or hurtful, they are still used in jokes and in informal conversation.

Cripple as a descriptor of disabled people is considered impolite, but the word has retained its metaphoric vitality, as in "the expose in the newspaper crippled the politician's campaign." The term is also used occasionally for its evocative power. A recent example appeared in Lingua Franca in a report on research on the behaviors of German academics. The article states that a professor had " documented the postwar careers of psychiatrists and geneticists involved in gassing thousands of cripples and schizophrenics" {Allen 1996, 37). Cripple is used rather loosely here to describe people with a broad range of disabilities. The victims of Nazi slaughter were people with mental illness, epilepsy, chronic illness, and mental retardation, as well as people with physical disabilities. Yet cripple is defined as "one that is partially disabled or unable to use a limb or limbs" (American Heritage Dictionary 1992) and is usually used only to refer to people with mobility impairments. Because cripple inadequately and in accurately describes the group, the author of the report is likely to have chosen this term for its effect.

Cripple has also been revived by some in the disability community who refer to each other as "crips" or "cripples." A performance group with disabled actors call themselves the "Wry Crips." "In reclaiming 'cripple,' disabled people are taking the thing in their identity that scares the outside world the most and making it a cause to revel in with militant self-pride" (Shapiro 1993, 34).

A recent personal ad in the Village Voice shows how "out" the term is:

Cripple, gimp, and freak as used by the disability community have transgressive potential. They are personally and politically useful as a means to comment on oppression because they assert our right to name experience.

Gill, C. J. (1994). Questioning continuum. In B. Shaw (Ed.), The ragged edge: The disability experience from the pages of the first fifteen years of "The Disability Rag," (pp. 42-49). Louisville, KY: Advocado Press.

[1] Various authors have discussed issues related to definitions of disability. See Wendell (1996), Longmore (1985,1987), and Hahn (1987), and also the June Issacson Kailes (1995) monograph Language is More Than a Trivial Concern! which is available from the Institute on Disability Culture, 2260 Sunrise Point Road, Las Cruces, New Mexico 88011.

[2] The definition of disability under the Americans with Disabilities Act is consistent with the sociopolitical model employed in disability studies. A person is considered to have a disability if he or she:

· has a physical or mental impairment that substantially limits one or more of his or her major life activities;

· has a record of such an impairment; or

· is regarded as having such an impairment.

The last two parts of the definition acknowledge that even in the absence of a substantially limiting impairment, people can be discriminated against. For instance, this may occur because someone has a facial disfigurement or has, or is suspected of having, HIV or mental illness. The ADA recognizes that social forces, such as myths and fears regarding disability, function to substantially limit opportunity.

How to cite this essay in a Chicago Manual of Style footnote: Simi Linton, “Reassigning Meaning,” Disability History Museum, http://www.disabilitymuseum.org/dhm/edu/essay.html?id=21 (accessed date).